Friday, April 16, 2021

Friday Update: Back to School

 

Homeschooling Resumes (Sort of)


Homeschooling started back this week after two weeks off for Holy Week and Easter. (We would have had to take those weeks off regardless to accommodate to Thomas's homecoming.) I was not going to resume school this week because I was so fatigued, I was bleary eyed, and juggling many new tasks. However, the kids expressed interest in school come Sunday night--especially Thomas! He asked me how soon he could "do his Kindergarten" the next morning?

It's really tough saying no to this little fella. 



So I printed out school lists which should be almost entirely independent (for everyone except Kindergartener and second grader) if kids have good attitudes and I said we'd give it our "best effort." Even on Monday when Thomas and I had three hour-long appointments over the day, we were sitting at our school desk by 9:00 and finished with Kindergarten after an hour: math, phonics, penmanship, and Bible story.

For good or for ill, Kindergarten has been much simplified since my first Kindergartener 10 years ago!


Amongst everyone else, we are doing some bookwork, they are devouring good literature, but mostly we are working on some enjoyable, well-rounded activities: one child is growing beans in the yard, Thomas is sprouting beans in moist paper towels and sprouting a carrot top on a plate of water, and I have gotten back to some gardening. The kids nearly daily visit four sweet dogs in adjoining yards to play with them. I've been working on a major garage spring cleaning (throwing away stuff) and reorganization an hour each afternoon which soothes my spirit. Three of the kids have been creating woodworking projects. I've been sorting all the boys' clothing for the first time in a year (swapping to appropriate sizes because it was getting pretty humorous), such that the hallway is full of bags for donation. We've taken numerous walks in this fine spring weather.

So, yes, we're only doing some school, but we're in the School of Life and Love right now.

First Haircut

Thomas got his first post-chemotherapy haircut, a wonderful milestone! It wasn't that his hair was too long, but apparently when it grows in from a bald head (like a baby), the hair is one mass of flyaways. Also, Thomas needed his hair trimmed off his ears and neck! Looking so handsome . . . 




Physical Therapy Progress

Thomas is gaining so much strength! He received a walker this week and you should see this kid take to it!




Our 12-year-old has become our Assistant Physical Therapist. The professional PT teaches Mary how to do everything and Mary is really the one (not me) implementing therapy during the week, the goal of which is three sessions daily (of at least a half hour each). 




Thomas is still supervised almost 24/7--including after he gets tucked into his bed in our room around 7:00 and one parent sits in our master room the rest of the night--but in a rare exception when he was hanging out alone in the den with me 15 feet away in the dining room, this determined little scamp crawled across the floor, climbed up into his walker himself, and then tried to walk to me! He scared me to death, but I was so proud of him.

One day he inquired, "Mama, may I scooch down the stairs by myself?"





Medical Updates

Pancreatic Function

Thomas took a second pancreatic function test and it improved by double, coming back in the low end of normal. This means he can drop one of two prescriptions. The doctors say his function will probably keep improving. Interesting info: While most of us lay people think of the pancreas as simply producing the hormone insulin to process sugar, the pancreas is actually responsible for producing three important hormones and three important enzymes to digest food: In fact, 95% of the pancreas produces digestive enzymes, leaving only 5% producing those hormones. Without a well-functioning pancreas, a person cannot get the nutrients out of the food he eats!

Bye-Bye IV Access

Thomas finished his week of overnight IV fluids and is now receiving nothing through his port. This means a huge milestone for Thomas: For the first time in five long months, he is not "accessed," meaning there is no IV line hanging out of his chest. His port is still there underneath his skin and will probably be removed in a minor surgery very soon. We are impressed and grateful that Thomas was accessed for five months but only experienced one line infection, which shows the excellent, careful care by the nurses and God's providence.

Somewhat More Rest

One of Thomas's drugs, which is only a very slow wean, finally transitioned from dosing every 6 hours to dosing every 8 hours, and this means no more midnight waking! Now, I give him medications six times a day but not between 10:00 p.m. and 6:00 a.m.

I had been becoming so fatigued, I truly was wondering if there would be a point when this stubborn old mule could not keep going on. Obviously, for four and a half months, my sleep was incredibly fractured in the hospital, with staff coming into the room every hour or two all night, and my doing Thomas's body care myself. Once at home, Chris and I were newly the one giving Thomas his meds and responding to his pump alarms, like those nurses had been doing, so I was maxing about six hours of sleep and waking a minimum of four times, but sometimes rising hourly all night long. If you haven't had chronic insomnia for 25 years, you might think that a person that exhausted would simply crash to sleep, but insomnia is its own living purgatory, so there were many nights it would take me an hour to fall asleep between each waking, which meant I was rarely sleeping.

No more IV pump means I only have to deal with the J tube pump, which doesn't alarm or need attention, if all is going well. No more meds at night means only waking to do body care. 

Thomas still suffers retching (vomiting). The team is working so hard trying to figure out this mystery that has plagued Thomas since PICU lo those many months ago. Articles and personal accounts of gastrectomy indicate that there is one to two years of adjustment required.

More than You Ever Wanted to Know About Tube Feedings

Each evening while the children whirl around me cleaning the kitchen, I finish calculating all of Thomas's meticulously tracked foods in My Fitness Pal.

1,300 goal calories

minus calories by mouth

equals how many calories (mLs) of J tube formula to run overnight

Say Thomas has a really good day and eats 600 calories: I still have to run 700 calories overnight, which at 40 mL/hour would take a whopping 17.5 hours! (But if I run it faster, he can't absorb it anyway and experiences dumping syndrome.) Say I run his tube feedings from 6:00 p.m. to noon . . . he still needs about two more hours off feeds before his body "wakes up" and he is hungry. We've tried requiring him to eat by mouth sooner than that and it makes him want to throw up because he is stuffed (with formula). So, then he might not be able to start eating till 2:00 p.m. and his eating window closes at 6:00 p.m. For how teeny tiny he can eat at a time, there is no way he can eat even 600 calories in four hours.

We discovered a problem to surmount: If we take Thomas on an afternoon outing, he barely eats, even though I pack snacks and push them on him. Then his calorie count is so low that it will take 18-20 hours of tube feedings to make up for it . . . which closes the eating window the subsequent day . . . so the cycle could continue.

Solutions? Thomas can't have multiple afternoon outings in one week. When we do go out, one idea is to put him on his tube feedings in his portable backpack so he is receiving calories during that time. 

Getting this kid to eat is a very big part of our family life now! A sibling or I prepares and encourages food almost hourly.

Baking with Mama

Baking with Mama

Fever

We experienced our first Fever Watch. We have instructions from his Oncologist and Pediatrician about how to handle a fever in an asplenic little kid: If he gets to 101, go to the Emergency Department, get blood cultures and a CBC with differential, and get IV antibiotics. These instructions won't be in effect forever, but asplenic patients are most vulnerable younger than six years old (and next most vulnerable younger than 18 years old), plus Thomas is  within six months of getting his post-splenectomy vaccinations, so they are still building up effect. Previously I would have had no idea what a spleen does, but it's very important in fighting off nasty encapsulated organisms. Anyhoo, Thomas had a fever of about 100.5 for two to three hours before it broke on its own. I forewarned Thomas that we might have to go to the hospital for antibiotics, so he wouldn't be startled and scared: he looked at me quietly and asked, "If we go, will we stay for fewer days than the last time?" (you know, four and a half months). Break my heart! When I was able to tell him we were not going to the hospital, and you should have seen his joy.

Believe Me, I Can't Do This

(as well as my prideful self wants)

I will have much better perspective on all of this in three months, six months, a year's time and I look forward to the spiritual insights I cannot see right now. This week when I took Thomas to his oncology appointment (milestone: first doctor's appointment to which I took him alone!), the oncologist said (with Thomas napping and unawares next to me), "Let me take off my doctor's hat and ask, how are you?" . . . and I burst into tears and let out a torrent of fears and stress and mental load.

I'm grateful for the kids doing their chores and the housekeeper who does our deep cleaning, even though I wish I could do all of it. I'm thankful for various kids and husband making breakfast many mornings since I'm busy doing Thomas's morning routine and medications then.

I'm grateful for the flexibility of homeschooling right now, since I can't run a strict ship at the moment.

I'm grateful for my husband who works from home pitching in as often as he can and doing most of the carrying of Thomas up and down stairs.

I'm grateful for these last couple weeks of meals our community is bringing us before I add in planning and making meals to what I am juggling.

I'm grateful that I was already a stay-at-home mother, so I can juggle multiple medical phone calls and emails daily, four therapy appointments weekly, one to two doctor's appointments weekly, managing a dozen medications, including calculating for weans, pushing food constantly when even a 5-calorie bite of something matters.

Goals I am hoping to tackle one by one are to rebuild individual relationships with each of my kids and husband, plus get each of the kids back into activities in society after such a long, isolating lockdown, and personally I need to redesign a formal spiritual life, visit with friends again, start exercising, start giving back to the community that has given so much to us, and lose a third of my body weight.


Homemade pancakes, sausage, and fruit made by 10-year-old

Eating lunch outdoors for fun

I am grateful for how the siblings are my personal Army of Child Life Specialists. They adore Thomas and do special activities with him numerous times daily. He paints and draws multiple times daily, he learned how to sew this week. We worked on a family puzzle this week. He has played numerous board games with them. He has sung countless rounds of songs with the siblings till they all breakdown laughing. They take him in the cul-de-sac in his wheelchair, on his adaptive tricycle, or driving his electric car. As I write this blog post, Thomas is napping and two siblings are sitting quiet vigil next to him because we don't leave him alone.





Colossal squid

First sewing project



Big brother reading aloud

Big sister snuggles

Gifts from a sweet friend

A gift from a sweet friend


Meanwhile, Thomas is processing it all and asking many questions. About a week ago, I read him a children's version of the Book of Job, which contains real spiritual insights into the story, not fluffy. Each night since, Thomas has asked one of us to read him the Book of Job before bed. I, for one, think he is doing deep thought about his own suffering.




We are all tired and trying our best in our new circumstances, but none of us are as cute as Thomas when we are asleep!

Sleeping with his stuffed squid


Friday, April 9, 2021

Easter Octave Update



Deliberating How to Proceed

Something on my mind has been how often to write on my blog. I've kept a family blog for 14 years, but it wasn't getting traffic like the 1,500+ unique daily readers that CaringBridge began receiving! However, as I go back to my typical writing, it won't all be medical updates about just one of my children, so I don't plan to stay on CaringBridge in general. Perhaps I will put some very specific Thomas updates on CaringBridge, but keep my general writing on my blog. Also, I would finally like to fulfill my dream of paying for a webpage and upgrading the whole blog . . . I just need time to research how to do it and then implement it!

Part of me thinks it's my season to sink back into obscurity, but I have loved writing since I was five years old with a pencil in my hand and beginning to write stories.

Would anyone like to offer input on how I gracefully bridge over from CaringBridge (just Thomas-focused) to our family blog and to a revamped, improved website? I'm short on time and technical abilities!

Getting Outdoors

My duties are still keeping me mostly inside, but I am trying so hard to start getting us outdoors. My Big Dream that currently seems like an Impossible Dream is for me to take a daily, brisk walk for 45 minutes.

This week, I will be content with the very first outdoor walk Thomas got to go on in five months! Joseph walked behind us festively blowing bubbles and Thomas carried his nature notebook, asking me to stop at various spots so he could sketch an image. I'm not exaggerating about just how much artwork he does daily!




On Easter Tuesday, some girls gathered for a Girls' Hike at a local lake, so I ended up taking the boys on a Boys' Nature Walk on the handicapped accessible path at McDowell Park.




I was startled how well Thomas remembered all the restrictions he had been under while receiving chemotherapy (but I shouldn't have been surprised at his memory). This week, he has asked numerous times before taking action, Am I allowed to touch dirt? Am I allowed to pet that dog? Am I allowed to hold this lizard? It has been a joy to tell him that his immune system is currently strong, so his oncologist has given him the green light to do all these little boy activities.


Centipede

Lizard

Dead snake (not just skin)



Artwork

Thomas spends more than half of his time doing art projects or singing at our player piano. He announced to me that it was very important to him to have the whole family do an art project together, by which he meant the Our Journey Westward nature-and-art lessons online (highly recommended). "With everyone, Mama."









Frozen Yogurt Outing

Going out in public with Thomas in tow still takes planning and mental energy, but we're giving it a try!

Dear family friends gifted us a gift certificate to a local frozen yogurt place, which even had low-sugar yogurt, which is better for Thomas. We went on a family outing, even though it kept us out a bit past Thomas's bedtime!





Physical Therapy and Occupational Therapy

We currently have OT coming in once a week and PT coming in two to four times per week, depending on the therapist's availability. Thomas is getting strong every single day. His overall constitution is brightening: In the hospital, he was taking up to four naps daily and sleeping 12 hours overnight (which we were thinking was not only healing, but a sign of depression). Each day at home, he has been able to stay awake a little bit more, so that now at the two-week mark, he is taking one afternoon cat nap daily, and sleeping about 10 hours overnight: typical of many five-year-olds! This week, he has become independent with his wheelchair on the ground floor, pushing himself around wherever he needs to go (indicating much better arm strength)--sometimes exclaiming, "full speed ahead!" In one week, he has gone from being able to stand only with "max assist" (meaning the therapist is holding up dead weight of a sack of potatoes) to "moderate assist."




Personality Emerging

During Thomas's first week home, he was admittedly still very quiet, a flat affect on his face much of the time. This is a huge transition for both him and me in one direction, and I'm curious but unsure how big of a transition it is for everyone at home having us here.

Even on Easter Sunday, Thomas remained quiet and mostly unsmiling, with just a few moments of brightness.

But during this week, Thomas is emerging and doing so in a big way! He is laughing all the time, cracking jokes, talking, starting to be able to raise his voice louder (fully inflating those lungs!), and singing his heart out, especially comedic songs, such as those from the Beethoven's Wig CD. Chris and I are reminded that we have long considered Thomas our most cheerful child out of six, something we couldn't see during his hospital stay.



Medical Updates

Thomas graduated off of TPN, we hope forever! His labs taken Monday looked good, so on Tuesday he was switched to one week of planned IV fluids, with the goal next week of receiving nothing by IV.

Dropping TPN means losing 50% of his calorie goal. Now my daily task is to count all his calories right after dinner, then program the pump to give him the remainder of his calorie goal in J tube feeds overnight (PediaSure Peptide). His calorie goal is 1,300-1,500 per day, but staying closer to the low end during this period of time when he isn't as physically active. He is currently averaging 700 calories by mouth daily, more than half his goal! 

Mary (12) has proven a dedicated and voluntary right-hand assistant in this area. She helps push food constantly, she gets up and makes him whatever food he wants, and she carries around her own little notebook tracking his food, which I then combine with my notes at the end of the day.

Thomas eats in very tiny amounts, often like a half slice of salami, and half a cracker, and one teaspoon of peanut butter. Yet, everything must be accounted for! You can imagine with serving sizes like that just how often we offer and encourage food and how readily we must obtain food for him when he is able to eat again. It is a constant

The GI team will continue to check his labs often (weekly for now) to make sure various nutrients and electrolytes are not getting out of whack. Long-term data will also start to reveal if he is having any problems with malabsorption. Obviously, tracking his weight weekly is also an important data point.

Meanwhile, I am becoming more confident in the new medical duties in my life, despite still having some meltdowns with husband and friends, and shedding some tears. Each day I print out Thomas's planned medical care and check off the sheet more than hourly, living by alarms on my phone which are, for now, my monastery bells. I carry my list and my cell phone on my person at all times, also because I receive numerous phone calls from medical caregivers daily. You know that MyAtrium (hospital) web portal that I've had reason to use only a handful of times over the years? Doctors are now pinging emails back and forth with us with specific care decisions numerous times daily. I know that will slow down, but it's a lot right now.

We have at least one medical person in our home daily, plus one to two medical appointments per week for this whole month. On good nights, Chris and I are up with Thomas, his meds, his pumps, about four times; on the rough nights, it is hourly. Sometimes I break down and I'm yawning pretty much all the time, but with God's grace and a lot of effort I'm doing my duties better than I was last week.

Onward and upward!

Levine Children’s Hospital Donation Drive

Please support this Levine Children’s hospital craft-and-toy drive in honor of our son Thomas Lauer starting this week! A sweet neighbor of ours is organizing this event.

Children who are patients experience long days (weeks, months!) in the hospital, often stuck in bed, and, when they are able, there should be no lack of things to pass their time. The hospital has very little budget to buy these items and depends on donations. See below flyer for more info.